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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiographyand all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Sunday, April 07, 2013

Why We Might Fear

Washington
DC

Several people responding to the Washington Postarticle
last Sunday have expressed their deep fear of having Alzheimer’s.In his comment to my post "Adventure,"
Richard Fox bluntly asks why more people don't commit suicide after learning
their diagnosis.

Where does the fear come from?

Most of the sources of fear that I can think of don’t
come directly from the experience of people with Alzheimer’s at all but from
those looking on from the outside.

Our fears may come from the images of Alzheimer’s in
popular culture, which are almost exclusively of advanced disease: The patient
has bursts of anger and paranoia; she wanders aimlessly and can't even
recognize members of her own family; he lies mute and helpless in a nursing
home bed.

Our fears may come from our observation of severely
demented people, staring blankly into our faces, embarrassing us as we don’t
really know what to say.

Our fears may come from the stories of exhausted caregivers
who have been traumatized not only by the terrible emotional and physical
stress of caring for utterly helpless invalids but also by the gradual loss of comfort
and support from the one they have loved and depended upon for decades. These sources tell us of deep suffering on the
part of the caregiver but may not saymuch about the actual experience of the demented one being cared for.

None of these sources asks the patient directly what
it's like to be in his or her mind. And, due to the fear, embarrassment, and
shame that surround the disease, no one with Alzheimer’s is going to volunteer
their stories, either.So we know little
about the experience of the disease at
all.

We know little about the stages of the disease (many of which are not so scary).

Early on, at my stage, no one notices the subtle
symptoms and most people aren't going to volunteer anything, either, so we
don't hear about early Alzheimer’s.

As things get worse and memory deteriorates, people
learn to hide their disability by faking normalcy (often quite well) or
avoiding interactions completely, so we don't know that part.

At a more severe stage, the person with Alzheimer’s may
stay (or be kept) out of sight even though she is still able to contribute.

And after still further decline when the patient’s
memory has gone, it may be very difficult for the patient to be in public despite
her capacity for meaningful interaction with others.

The end result is that our fears rarely come directly from
the experience of an actual patient but from our imagination, an imagination
that has had little real contact with Alzheimer’s.What could be more terrible, we imagine, than
forgetting the name of a person you know well; repeating the same thing you
just said five minutes ago and five minutes before that; standing there mute
and unable to join the general conversation; or vegetating in that nursing home
bed?But those are our projections now (as people without dementia) of how
we would feel if we were demented.But since
we aren't demented, we don't actually know what we would experience or how we
would feel. Perhaps we have a distorted
picture of the experience of Alzheimer disease.

Here are some counter-examples that do show each of
these stages but the images are far different from what we’d expect.

I am myself early in the course of the disease and I
can still write a blog of my experiences and find my way downtown to go
bike-riding to the library with my grandchildren.

One delightful movie Friends With Benefits provides images
of a later stage of the disease.The
father is indeed sometimes confused, but not always, and he ends up playing an
important and positive role in his son's life.

Joy (Joy
at Joseph’s House) is a significantly demented woman not really able to
interact socially with others, yet she brings meaning and happiness when she
visits our hospice.

Years ago I saw a documentary in which a daughter and
demented mother were dancing joyfully around the room.The daughter later explained that her mother
and she had had a terrible relationship most of their lives.Now her mother had forgotten those difficult
times (indeed, had forgotten who her daughter even was), and for the first time
they could enjoy each other.

Many of the comments in this blog and emails that I’m
now receiving write of relationships with people in much more advanced stages,
in which companionship, love, humor, closer relationships, and deeper meaning have
become possible because of the
Alzheimer’s (see, for examples, Lee An Gerleman’s comment after my last post or
Tim R’s comment after “State
of Consciousness.”)Several people
have told me of reconciliation with estranged parents as old hurts are
forgotten and both people stay completely in the present.

28 comments:

You have to remember that there is always value in someone's life, regardless of what stage of any situation we are in. In a open area, such as a regular nursing home, its sometimes too big an area, people wander trying to find a familiar place to be. So they wander from chair to chair, none of it feels homey. In a smaller unit, where there may be 3 aides or nurses to 8 or 9 residents, we can sit and socialize on their level. If the unit is small, they quickly find their place to be. And heaven help somebody if they sit in their spot. LOL. If we have music and sometimes games, it can be really fun. One elderly lady with a tattooed number on her arm, clapping and teaching all of us Polish drinking songs. You just have to clap at the right time. (smile). Even tho it sounds elementary and childish, its fun for all of us. I think if you were a nervous individual as a child, you will eventually be a nervous alzheimer's patient. If you were a laid back, relaxed sort of person, you will enjoy watching the fishing videos or the golf tournaments on TV. If you like to bake, we had baking and even the old farmer guys would make cookies. If you are just living in the moment, you'd be surprise at what you can enjoy. I don't believe it is much different for the patient, inside, than it ever was. They are the same person, same loves, same happiness or nervousness than ever. I think for a very long time, the patient feels the same on the inside. I don't think they lose themselves. Only in the last few months, they may seem to be going away. But they may still feel the same on the inside.

Le Ann:Thanks again for your contribution to the site. You've given a couple of variables that might be helpful in maintaining relationships and making even the last years into positive experiences:1) a smaller, homier unit.2) a high nurse-to-patient ratio3) visitors who enjoy being there4) pre-existing personality. I wonder whether it is possible to modify the personality as soon as the symptoms of Alzheimer's are recognized.5) Experiencing a program with others with whom the patient is are familiar.

I have worked much of my life among impoverished people and some of those very simple steps will be hard to organize because of lack of money for the best care, lack of time, lack of knowledge, etc. The poor seem to get it both coming and going.

this last place I worked with the special care unit is 50% medicare, medicaid. In other words, 50% of the people in the facility are medicaid patients There are a lot of them around. You just have to check them out. Of course, maybe it would be depressing for you, but most have small raised gardens (one lady used to steal all the green ones and put them in her window), patio, barbeque grill, flowers, music, light, rooms with things that are important pictures, etc. There are nice places. No more 'county poor farms" around.

Recalling my clinicals in nursing school, feeding a woman with a peg tube, trach, etc. my partner said quietly,, "that's why we should all have a shotgun in the corner." And I said, "And someday you would say, 'what's that thing in the corner?'"

One of the first items on my agenda after the dust from the Washington Post article settles is to visit some Alzheimer's facilities. I'm very interested in seeing what's available for Medicaid patients because that is the coverage I will have. As you know, Medicare doesn't cover nursing home expenses.I love your "shotgun in the corner" story. There's a similar story in the novel "Still Alice" in which Alice hides a bottle of lethal pills and writes herself a note about where they are how to take them as soon as she has reached a certain level of incapacity. Alice gradually loses the ability to understand the note and finally wonders who this woman is who's trying to kill her.

Dear Dr. Hilfiker,I became aware of your blog through an article in today's News & Record (Greensboro, NC) and I want to thank you for what you are doing while you can still appreciate that we are reading and absorbing your words. I went through hearing that my partner had inopperable lung cancer and the five months that followed until her death. I learned a lot about courage and personal integrety from her. I never heard her complain or whine or cry about her fate; instead, she re-established contact with all of the people who had meant something to her during her life. Her last five months were very rewarding....for both of us.The second thing that I would like to tell you is that, even after only a first reading of your blog, I have become more reflective about my own 'end of life'. Of course, I don't know when that point will come; I'm a relatively healthy 80 year old. But I do know that there are no more corners to turn, no more 'new' lives to live, and that from here on my lifespan is limited. I think from here on, however, I will live each day with the realization that I am one day closer to that end. I will live it fully and completely, and I will cherish all of the people I care about just a little bit more.Thank you for what you are doing. I'll continue to follow your blog, and I wish you peace.

I can well understand why your partner went about re-establishing contact with those she had known. It seems to me so far that the most important thing for me is and I suspect will be the community that surrounds me.

I am learning a lot from your blog David! No I'm not an Alzheimer's patient, or at least I don't think I am. LOL. I beleive that how do you fear the unknown when you are not in the unknown? I remember when Charlton Heston made his announcement, he faded away and eventually succumb to the disease. I understand Richard's response though, as it sounds like something for Kevorkian to be called in for. Towards the end, I understand that quality of life can be precarious and there's some pain to this disease. However, I have heard many sweet stories, such as the daughter and mother above. I am reminded of one such story where a daughter would visit her father in a wonderful home dedicated to such patients. She looked exactly like her mother, and as her father regressed, he was [again] infatuated with that young lady he met and eventually married. When she would visit he would flirt with her constantly, smile wink and even ask her out. She would oblige and got to lunch with him. She was too tickled that she was providing some joy to her dad, she just had to make sure he kept his hands to himself. <3

What a lovely story about the young woman and her father. How wonderful for her father to be able to re-awake his love for his wife through his daughter.

How each of us prepares for those last days will, of course, be an intensely personal decision, including the decision to suicide. In Alzheimer's that decision becomes very complicated because one has to make the decision, say, to suicide or not much earlier in the disease (because one loses the capacity to carry it out or even remember why one wanted to suicide) while one can only imagine what the future will hold. We don't know what those last stages will hold for us, yet we decide to step out. I can well understand while some would choose to end their life, I think I'll just be too curious ever to do it.There is a story told in the novel "Still Alice" written from the point of view of Alice who has Alzheimer's. Early in her disease, Alice decides she will commit suicide when she has progressed past three different levels of incapacity. She writes herself a note describing the levels and puts it with a bottle of pill high in her medicine cabinet, instructing her to swallow the pills when she reaches the level. Gradually through the book, she has increasing difficulty understanding what the stages are and then what the note means. Eventually, she wonders who this person is who is leaving her notes trying to kill her.We never know how it will seem until we get there.

Despite mourning the loss of what I'd "imagined" Dad might have been like without Alzheimer's disease, I'm so glad that he stuck around, even with his Alzheimer's disease. I learned so much during his illness, perhaps because of his illness. One of the most memorable things that happened was during a hospital visit. Dad had been admitted for an infection. The doctors were recommending hospice care. I'd come in from out of town and stayed with Dad overnight in the hospital to relieve Mom. He didn't know who I was and hadn't spoken coherently to me in years. In the middle of the night, he was stirring in his bed, so I pulled up my chair and asked him "What are you trying to tell me Dad?" He sat straight up and with full eye contact he said very clearly, "The important message is, we're alive, today - one-on-one." As quickly as the words came out, he slipped back into his mind.

Dad went home with hospice care, which continued for eight months until his death. During those months, he never spoke quite as clearly as he did that night in the hospital, but there were several incidents where we "knew" he was right there "with us." To this day, I remember his message and repeat it often.

I wonder what HIS experience was of "knowing" he was right there "with you." The cynic might say the experience was just your projection (and I suppose it could be), but we humans know the difference when someone is "there" and when he isn't. But what was your dad's experience? Of course we can't know, but I'm certainly curious.I'm also curious: When your father's cognition was still intact, would he have said something like the message he gave you from inside Alzheimer's or had he discovered something new while living in that world?

David, no, this was not something that either of us would have said. I remember texting my siblings, telling them about what had just happened.

I can't say for sure whether or not his cognition was intact or if he had discovered something new in "that world." I wondered at the time if maybe his comment was a thought he'd had in the past, but never expressed. I'll probably never know, but either way, the message was beautiful.

My name is Herb and I live in the DC 'burbs. [I'd select a "Comment as:" thingie if I knew what any of them were.] I, too, was encouraged by the _Post_ article to visit. I have an untreatable form of cancer and expect to die sooner rather than later. As my sons say, I'm "pretty Zen" about it. I am not afraid of death, not yet anyway.

Recently I have been overtaken by encephalopathy (bad brains) because my body chemistry is out of whack. I relate quite strongly to your experience. Sometimes I'm all there, sometimes I'm completely disoriented. I can concentrate on specific tasks but get confused trying to do crossword puzzles. I had to stop driving when I got lost on two-turn trips I've made 100 times; after I passed through intersections and wondered if maybe the light had been red.

On bad days I get confused and frustrated. On good days my wife gets confused and frustrated because I seem normal but am not. I'm not suicidal over cancer or encephalopathy but I sometimes wish (guiltily) that it was all just be OVER for Goodness' sake. The waiting may be the death of me.

My wife knew something was wrong before I did, and once I got the picture I was terrified that I might have Alzheimer's, which illustrates your point about fears imposed from without, and I was relieved when the neurologist told me it was "just" encephalopathy. "Good", I said to myself, "I'm sure glad that AD isn't the reason for my brain's collapse." Small consolation, that.

Anyway, I appreciate that you're blogging about these things. I don't really care to hear about how awful it was living with demented Aunt Lucy. I'd rather learn about dementia from the inside out.

Your experience is helpful in that you move in and out of the confusion and can, I assume, remember the confusion. I don't know if you perceive them as "good" or "bad," but I wonder which feels worse, being in the confusion itself or being normal but thinking about your future.Thanks for writing, Herb.

I first learned of your blog when the Chicago Tribune printed the Washington Post article about you and your wife. I am enormously grateful to both of you. My husband died two years ago, seven years after a diagnosis confirming what I had feared for two years before. I hope that your comments will help clarify for me those experiences that have remained opaque.

When one of our doctors told me, not long before the end, that my husband had become aphasic and unable to communicate, I was horrified and denied it vigorously. I had by then learned that language is only ONE way of communicating, and probably not the most reliably truthful anyway. Had we not learned and lived that together, had he decided to check out early, our family and I would have been devastated. His greatest gift of love, among so many in our lives together, was sticking it through to a natural end.

Please tell that to Richard Fox, and any others who ask about suicide. In some cases it may be the way to go, but I'm glad it wasn't ours.

One thing keeps shining through many of the responses over the last several days is that the "person" remains long after most of us would imagine; communication remains not only possible but beautiful after cognitive functions are almost gone. "His greatest gift of love, among so many in our lives together, was sticking it through to a natural end."David

There but for the grace of God go I. A caregiver 14 years, to my loved one, led me to believe she did not know what was going on in latter stages. In the beginning she cried seated at her desk, saying, she was good for nothing, and couldn't do anything. My heart went out to her, and I said, "Sure you can." and she cried. I said to myself, There for the grace of God go I, when she was slumped over in a wheelchair, unable to lift her body straight, unable to lift her head, and looked only at the floor. Then her eyes closed, most of the time on my visits to the nursling home. I'd sat across from her thinking, 'what does she want me to do?' after all, I'm her voice, the one who speaks for her. Within my being I heard, "Rose, let me go. Stop the medication, stop the food, stop the liquids, just stop, and let me go!" That's when I told the nursing home, "Stop" when they called to tell me she had another infection. I said 'Stop' because I put myself in her shoes. There but for the grace of God go I.

This sounds like my mom's experience. Thankfully she had it all written out in her advanced directive, "No feeding tube" etc, yet when she was in serious decline the nursing home put pressure on us to treat every little thing. She had lived with my dad a chain smoker who died before her of emphysema, so it was no surprise to us, when she developed some breathing issues. We had to keep reminding them that she did to want to prolong her life which stressed us out with the feeling that they must think we we were heartless. In the end we pulled her out to die at home under hospice care, which she was able to do in just 3 months after years in a nursing home. I hate to think this, but she was self pay and I wonder if that was a big help for the nursing homes bottom line since Medicaid does not reimburse much.

jmojo: I suspect your experience is one of the reasons that people fear Alzheimer's: losing so much control over their lives ... and their deaths. In my mind there was no excuse for the nursing home to try to pressure you away from your mom's explicit wishes and your family's sense of what was right for her. This is what community (whether a few friends, or family, or an entire faith community) is for: to protect you when you can no longer protect yourself. I suspect that there would be less fear of the disease if more of us were confident that we would be safe and that our wishes would be followed when we had lost cognitive powers. But the medical and nursing professions can be pretty intimidating, so one must know what are a patient's (and caregivers') rights.Good for you that you knew enough to get her out of there!

Thank youMy mom died of A , my dad took care of her for many long years. The pain seemed to be more his. I remember most how she forgot to be hyper critical and we finally got along well.I remember one time, lunch at applebees when, after the waiter put her plate before her .. "how wonderful it is , you have pleasure twice at lunch, once in selecting what you want to eat, and, when it comes it is a surprise as you have forgotten what you ordered."I remember , a fees ays before her death my dad apologized, how sorry he was that she was sick. "what makes you think I am not happy?" she said.And once, when she couldn't seem to remember much at all, and I tried to play some folk music on the violin for her she took it from me and performed with perfection several old folk songs. She had played Colin all her life bud had forgotten. About it or so we thought. Interestingly, she sat the violin mid chest, instead of under the chin. She was playing the fiddle the way she had learned as a child from the fiddlers at the. Square dances. I had never seen he play that way, as she was a classical music violinist.So, though I fer for my caretakers pain, I have lost much of my fear of the disease. No matter my decline, I look forward to giving ithe love I can for as long as I can, and for seeing what life brings as always.

What a lovely story! Thank you for sharing it. Amazing that your mother would pick up the fiddle after so many years.And how wonderful that she forgot her hypercritical nature!"What makes you think I'm not happy?"

I am surprised by how many of the stories I've been getting are in some way like yours, telling of the joy that also exists in Alzheimer's (while not forgetting the difficulties and pain of the caregivers that is often part of it).

I once worked in an Alzheimer's unit that was very rich and all private pay. four of the scientists from the Manhattan Project were in the same pod (of 13 people). They had forgotten who the other were, I guess. One little woman used to steal my nurses notes, all of the little scribblings that a nurse would make to remember. She would take my notes over to the grand piano, sit down with a flourish and play for hours, from my notes. She never missed a note, played probably four or five different sonatas or whatever you call classical songs, Bach, Beethoven, etc. If I tried to take my note papers back she would get all upset, so I'd let her keep them as long as she played. When she was done, she would bring the papers back to me, and put them on my cart, with a quiet little thank you.

As I listen to the stories that you've shared in several comments and those of others, I'm beginning to realize that there is a whole different universe that is still in the mind even as cognition slips away. What is that in her mind that requires your "notes" for her to play the "notes" of such wonderful music? How many of us know that such a universe even exists? How would the world be different if we did? I'm reminded that some native cultures had a place in their society for some of those with mental illness: They became medicine man (or woman). Inside your Alzheimer's unit, there was a place for your lady and, presumably, others. How much we could learn from that if we payed attention!

She would even pause and turn a page of my notes, as if to get to the next page of music. I know that you are headed on a journey that you didn't want and wouldn't ask for, and the one thing I would like to share with you by my experiences is that every one of those people that look confused, scarey, anxious, not understanding can be totally different once you get to know them. They have as much humanity as they ever did. And maybe because I spent years around them, I do pretty good interacting with them. They all want the same things we do, to be praised for doing right, help without making them feel shameful or stupid or forgetful Every person has something left inside them that you can bring out just by talking and making them feel important. If I put my arm around them, and sat and asked them questions about their childhood they can perk up and talk for quite awhile. We'd talk about corncob burning in stoves, blizzards, siblings, etc. and they can sometimes open up and be so calm and relaxed Maybe i just learned that because I was around them for so long. Just have to remember for every anxiety or problem, there is a reason. for every fun moment, there is a reason.

What happens to most of us when we look into those confused, blank, scary, anxious faces, we don't know what to do. We forget (or don't believe) that they are still just people. We don't know how to reach out even if we want to. What you apparently have by grace or by experience is the gift of being present to this confused person and not being afraid. I suspect that the rest of us can learn capacity to interact if we are willing to be quiet, to be present, to let go control, and risk being embarrassed or uncomfortable. Thank you again, Lee An

Lee An -- I have so enjoyed your comments here and on other pages. The 'notes vs. sheet music' I find fascinating. My most recent loss of cognition is that I (who majored in music) can no longer play my violin from sheet music -- the ability to translate the notes on the sheet music into where to put my fingers on the violin is practically gone, or takes such a long note by note process, I have given up in frustration. I can however still play from memory quite well, and if I 'know the tune' and can figure out the first few notes from the sheet music (that takes awhile), somehow I can read??? (not really) the sheet music and play the notes. It's just any new piece of music takes a note by note process that I find too discouraging.

...but I can still 'jam' or improvise to any blues that comes on the radio!

One of the many thing your note implies, Megan, is that the loss of mental function is not global, at least not for a long time. You're having trouble reading the notes (cognitive function) but you have no trouble playing the music. I'm not enough of a neuroscientist to know where that capability resides in the brain or why it's not also affected by Alzheimer's, but it's clearly different from the cognitive function ... and it persists. Similar to our capacity to enter into relationship with others, we retain some important (but perhaps less culturally valued) capacities.I love these stories.

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What is this blog

In September of 2012 I was diagnosed with cognitive impairment, probably Alzheimer's disease. This blog is the story of my day-to-day life with this illness and my reflections upon it. We tend to be scared of Alzheimer's or embarrassed by it. We see it as the end of life rather than a phase of life with all its attendant opportunities for growth, learning, and relationships. We see only the suffering and miss the joy. We experience only the disappearing cognitive abilities and ignore the beautiful things that can appear.

On October 30, 2013, the diagnosis was significantly downgraded to "subjective cognitive complaints." The blog posts before that date are written with the understanding that I had Alzheimer's, now unlikely. Since that time I have written of the uncertainty about what has caused my damaged brain.

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I am a 68-year-old retired physician and live with my wife in the nation's capital. I practiced for seven years in an isolated rural area and then for ten years in an inner-city neighborhood.
In 1990 we founded Joseph's House, a home for homeless people with AIDS and cancer. I have continued to write, teach and lecture about poverty, politics and other issues.
I am writing this blog to dispel some of the fear and embarrassment that surrounds Alzheimer's and other cognitive impairments.